Great Advice from a Dementia Care Worker

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May 18, 2016 |

16 Things I Would Want If I Got Dementia 

Rachael Wonderlin specializes in long term dementia care. She is the Memory Care Director at Senior Services Of America and blogs at Dementia By Day. Rachael has spent a lot of time fielding questions about the disease and has a heartfelt wish to share.

When you work in dementia care, people tend to ask you a lot of questions. Probably one of the most common questions that I hear is, “Are you afraid to get dementia when you’re older?”

Professionals like Rachael will often tell you that there are many things much more scary than dementia. Rachael doesn’t want to diminish the fact that dementia is a terrible group of diseases. She wants to highlight the positive aspects and help us all understand how to deal more powerfully and compassionately with those who have dementia.

“I’ve been fortunate, however, to see many of the beautiful moments that people with dementia can experience.”

If Rachael gets dementia, she is prepared to advise her family and friends. She has developed a wish called “16 Things I Would Want If I Got Dementia“.

  1. If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
  2. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
    If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
  3. If I get dementia, ask me to tell you a story from my past.
  4. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
  5. If I get dementia, treat me the way that you would want to be treated.
  6. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
  7. If I get dementia, don’t talk about me as if I’m not in the room.
  8. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week.
  9. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
  10. If I get dementia, and I live in a dementia care community, please visit me often.
  11. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
  12. If I get dementia, make sure I always have my favorite music playing within earshot.
  13. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.
  14. If I get dementia, don’t exclude me from parties and family gatherings.
  15. If I get dementia, know that I still like receiving hugs or handshakes.
  16. If I get dementia, remember that I am still the person you know and love.

Originally published for Alzheimer’s Reading Room, we think this is a great list for all dementia care workers to have as a resource.

To learn more about Rachael, visit her blog dementia-by-day.com

Aging Action Initiative (AAI) is a collective effort of over 65 different agencies, grassroots organizations, commission and neighborhood groups, funded by the County of Marin and coordinated by MARINSPACE, collaborating for an age-friendly environment. For more information visit agingactioninitiative.org or connect with us on Facebook.

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Aspirations & Hopes Word Cloud

This word cloud is a complication of all the aspirations and hopes expressed by participants in all 4 workgroups during the first workgroup meeting.

This word cloud is a complication of all the aspirations and hopes expressed by participants in all 4 workgroups during the first work-group meeting.

Please \"like\" us to stay connected: